Top 10 Most Painful Diseases

A diseased existence is worse than non-existence. It’d be highly unjustified to rate diseases as every suffering is impalpable by anyone other than the sufferer himself. The researchers devised scales to actually rate the amount of pain one suffers from and it’s solely on that basis that we have come to enlist some of the world’s most painful disease. God forbid you from experiencing them and we the immortal beings pray for the healthy existence of our readers while to those suffering from any of these, we wish a swift recovery.

10) Crohn Disease

Crohn Disease was recognized in the year 1932 by Dr. Burrill B. Crohn along with Dr. Leon Ginzburg and Dr. Gordon Oppenheimer. Crohn disease basically belongs to the group of Inflammatory Bowel Diseases or better known as IBDs. It causes inflammation of the gastro-intestinal tract. Thus, even normal bowel movements can be really excruciatingly painful.

Crohn disease’s symptoms are often confused with those of ulcerative colitis which is yet another Inflammatory Bowel Disease, as the symptoms of these two are very similar and both affects the gastro-intestinal tracts. However what marks the two different are the areas affected. While Crohn affects the end of the small bowel or the ileum and the fore areas of gastrointestinal tract or in worst cases the whole tract from mouth to anus. Ulcerative Colitis is a little less harsh as it is limited to the colon region. Crohn can affect the entire thickness of the bowel wall.

9) Migraines

Out of every 4 people who suffer from headaches one could be the case of Migraine. In America alone, more than 28 million people have to go through the ordeal of migraine. The worst part about migraine pains are that it can be triggered by anything and without prior warning. That means you’d wake up fine and something a few hours later will trigger your migraine and your whole day will be gone trying to ease that pulsating pain. It literally robs you off the quality of life.

The most common symptoms associated with migraines are pulsating headaches (it feels like one of your nerves will burst), nausea, vomiting and light sensitivity (most of the patients suffering from migraines are told to retreat in a dark room as soon as possible). It is a chronic neurological disorder and can have an effect on half your brain. It can last up to 2 to 72 hours.

8) Arthritis

Arthritis is painful and moreover it is painful in 100 different ways. There are more than 100 forms of arthritis recognized till date. It is a form of joint disorder and the most common symptom is the inflammation of joints. The inflammation is followed by intense incessant pain localized to the joints that are fatigued.

Arthritis is one of the most common causes of disability. The patient not only suffers from inflammation and pain but in some cases, is robbed off his/her ability to even walk or function, especially movements that include using the joints (which includes almost all bodily movements). This disease is apparently so old that a mummy, named Ötzi, which may have been mummified in 3000 BC, was found out to be a death resultant of arthritis.

7) Appendicitis

Appendicitis is medical emergency that means no prior symptoms or warning akin to heart strokes and kidney stones, is experienced by the sufferer. Appendicitis is caused by inflammation of appendix and the only symptom is the severe abdominal pain.

The immediate symptoms may be pain, vomiting and fever and as the appendix swells the pain will move into a downward direction from the stomach-high. Then, it can stay in the localized in the right lower quadrant. It can be cured by a surgical procedure called Appendicetomy through a Laparoscopic removal which is remotion of the infected appendix and the full recovery (in case the appendix had been ruptured) can take anywhere from six to eight weeks.

6) Hidradenitis suppurativa

Hidradenitis suppurativa is an extremely painful skin related disease which mainly affects the areas containing sweat or sebaceous glands that means the underarms, under-breasts, inner thighs and groin area. Although it’s a not contagious disease but popular perception is otherwise because it can cause clusters of abscess in the affected area or cysts which may appear in multiple locations over the body.

The size of these formation can be huge (the size of a tennis ball) in aggravated stage or small (marble or pea sized). These knots like cysts are extremely painful to touch and the inflammation sometime causes the abscess to erupt through incision that appears due to stretching of the skin.

5) Fibromyalgia

Fibromyalgia (fibro- tissues, myo- muscle and algos- pain) is described as the “central sensitization syndrome”. Out of every ten person who suffer from Fibromyalgia, nice are women. It could be a resultant of psychological, genetic, neurobiological or sometime environmental factors. Around the world about 3-5% of the population is believed to be suffering from Fibromyalgia. The disease is synonym with pain as the symptoms include chronic pain, muscle spasms, weakness, nerve pain and sleep disturbances.

The exact cause of this disease are still unknown though hypothetically the hyper reactivity of pain sensitive cells if oft blamed. This gives the Fibromyalgia patient a disadvantage when it comes to threshold of pain.

4) Kidney Stones

The condition of Kidney stones is also called renal calculus that literally translates into ‘Kidney Pebble’. Men are more prone to developing this crystal aggregation than their female counterparts. The shooting pain of Kidney stone is localized in the area between the ribs and the hip also called the flank.

Although it’s the occurrence of a stone that’s the real problem but first concern if the pain that accompanies it. It can be controlled using opioid or anti-inflammatory drugs that surpass the blood-brain barrier. The most common hallmark of Kidney stone is the excruciating and sporadic pain. It is observed to run in families. Nevertheless, diligent dietary measure can cut down one’s risk of developing Kidney stones.

3) Ebola

Ebola virus disease (EVD) or Ebola hemorrhagic fever (EHF) is caused by Ebola virus. The name is derived from Ebola River, where its causalities were first recorded. It is a type of a viral hemorrhagic fever and is almost alike to Marburg Disease.

It begins with influenza like symptoms and as the conditions aggravates the patient might suffer from chest pains, abdominal cramps, sore throat, headaches and could lead to coma. The unfortunate part is that till now there is no specific therapy yet approved by FDA for the disease caused by this particular virus. So the process is mainly about minimizing invasive procedure, electrolyte retention and other supportive procedures.

2) Cancer

It is often resonated that when a person suffers from cancer then s/he doesn’t suffer alone the entire family and friends suffer from it too.

The pain in cancer is caused by almost everything; the disease, the treatment and the post-treatment recuperating period. It pains when the tumor compresses or infiltrates the tissues, it is excruciating to undergo the treatment and diagnostic procedures, the hormones and processes that the human body undergoes to put up a fight against the tumor, the chemo and the radiotherapy, effects of which doesn’t end with the session. The pain can last a lot longer after the treatment.

1) Causalgia

Causalgia or the Complex Regional Pain Syndrome was also known as Reflex Sympathetic Dystrophy. It is also the most rarest and painful disease. In causalgia the arms and legs experience an incessant sense of aching and seething pain, the area discolor and develops a high degree of sensitivity. The pains gradually become worse as the situation aggravates.

Causalgia is concluded as a multifactorial disorder which includes neurogenic inflammation, extreme sensitivity and vasomotor dysfunction. The treatment of Causalgia is a complex one and involves intense therapy sessions, drugs and psychologic treatments. It can affect at any age however, the mean is 42. Women are more prone to Causalgia than their male counterparts.

102 Responses

the complex regional pain syndrome isn’t just aching pain its also a burning, stabbing, sharp, strong, spiralling, flashing and being wrapped in barbed wire, having your bones grated by a cheese grater or something and lots more that’s hard to describe and it causes swelling, temperature and colour changes and affects the central nervous system and the sympathetic and parasympathetic nervous systems|. the pain is often off the pain scale and the simplest things such as the slightest temperature change, the lightest touch and the tiniest movement/ weight bearing and more can cause unbearable agony that often leaves you screaming and crying in pain.

It is only available in england with private insurance. The NHS doesn’t offer it. I just tried to kill myself on Friday because of pain and they made me wait 15 hours only to have my pain and lack of sleep be ignored again. There is no relief. Nobody cares.

Hello Kate, my name is Sue. My sister-in-law has RSDS/CRPS. She has even had her right leg amputated from just below the knee. She started a 100% all natural capsule, 3 weeks in her symptoms started to disappear. She now wears her prosthetic leg, she goes golfing, fishing and horseback riding, We go shopping now and we walk the store, no more wheel chair for her. She is completely symptom free, please email to find out more info- susancraig_64@sympatico.ca.

Hi Sue.
that’s amazing that your sister in laws symptoms disappeared and that she can do the things she wants, would you be able to email/message me some information on the natural capsule that she takes please. I tried emailing but it said invalid address every time, sorry!

Kate, You hit it dead on!! You’ve described everything I feel to a T! Most times I beg God to take me.and what really upsets me is the fact that my dr has diagnosed me with all these very painful conditions and continues to lower my meds. He sees me suffering but says his hands are tied, It is Inhumane what the government is doing to those of us existing in severe pain. I surely can relate to the many who have taken their lives to escape the never ending excruciating pain, then add the stigma and degrading the government has done is enough to push people over the edge, feeling hopeless and nowhere to turn.

CRPS is actually more painful than cluster headaches, and cluster headaches frequently accompany (causalgia/CRPS/RSD) once the disease has spread to the trigeminal nerve. And that is just one of the side effects of the disease. CRPS is well known as the “suicide disease” same for cluster headaches and trigeminal neuralgia.

RSD also affects internal organs, in most advanced cases that includes all of the organ system because once the autonomic system becomes inflamed and dysfunctional it begins to damage many organs. Just for some clarity on the issue of pain ( as sickle cell cell is almost certainly more likely to be fatal) sickle cell scores an average of 35.5 on the McGill Pain Index and RSD scores an average of 42 (on a 50 point scale). At 35.5 sickle cell most certainly should have been included on this list, but I don’t think anyone is arguing that this is a comprehensive list. Many disorders that should have been included were left out.

THANK YOU they are acting like every disease is listed but THEIRS…. is my disease even on any of the list not on here it’s not is it on MCGill Pain Index? I mean I have Crohn’s arthritis and cluster migraines… NOW I also have Schuermanns disease the worse thing I can imagine I’d rather die even my pain meds have stopped working and the 22 screws and rods I have down my entire spine is not working and neither is the TENS unit I have or the nerve drugs and the opiods and muscle relaxers nothing… it’s so bad I pray for death many nights.

I guess some missed the OTHER post that said if the title were to read “The 10 Most Painful Diseases I’ve Heard of” or something to that effect would’ve changed the whole tone of the piece (and subsequently the comments)…. Plus, I think it’s a GOOD thing that people have opened up and shared their issues, their battle…why? IT’S AWARENESS, point blank period. THE END. There are people who’d never heard of some of these illness until someone else asked why they weren’t included. Unlike some, I will NEVER tell anyone how they should feel or react in regards to what they have to battle on a daily basis. They’ve earned the right to feel how they feel and to get their feelings out. It’s not like they’re punching people or threatening to kill someone.

WOOOOOOOW, once AGAIN, the Sickle Cell community is BLATANTLY ignored and pushed aside! Not only is it EXCRUCIATINGLY painful, it’s DEADLY at that!! I am so sick of the medical community & the CONSTANT DISREGARD of our lives & our struggle. Thanks for nothing. We’ll just continue to bury teenagers and others barely out of their teens while THEY continue to IGNORE US!!! ABSOLUTELY DISGUSTING!!!!

i don’t think this list is comprehensive enough! There were a lot of very painful diseases that didn’t make the list. Sickle cell DEFINITELY should be on there, you are absolutely right! Sometimes the writers go on what they know and do very little research. Perhaps this is what happened here.

.my 14 yr old daughter has been diagnosed with crps April of 2013!
Its horrible! It’s so painful and causes her hands to shake from the pain! It includes tingling numbness, burning, stabbing. Let’s not forget the temperature changes to affected areas hot or cold. So sensitive to touch that clothes can hurt! Taking a shower can hurt! During bad times of pain. Drs explain it can feel like a horrible sun burn…minus the actual sun.
Not to mention toes of affected leg can loose feeling and turn all sorts of colors!(different colors her skin will b hot or cold!)
Countless trips to Er, countless Dr appointments and countless trips to neurologist…and about 5months of intense physical therapy 3x a week! Lost days of school and fun! Topped off with a RX of juvenile rheumatoid arthritis…
You can’t ever imagine the pain that comes from these conditions physically and mentally! She spent 8 weeks straight having to use crutches just to walk…not able to even put the slightest weight on her affected foot! It’s truly a nightmare!
I lost count of how many Er trips just from before her being diagnosed in April of 13 and June of 13 (any where from 1-2 times a week) she is now finally at a pain level less then 5 at this time! She had been 8-10 up until a couple of months ago! But she’s found her way back to needing physical therapy again now! ….her affected areas of crps mostly right leg, foot and ankle and right arm, wrist and hand. juvenile rheumatoid arthritis pretty much everywhere!!
She’s a true trooper though and such a strong kid!

Forgot to mention needing meds daily now! Different ones. The average pain killers do not even touch pain! Vicodine, didn’t help and doesn’t help with this disorder! Nor does Tylenol 3. So not like any1 with crps having extra pain can take such meds to help the pain b less not even temporarily!

Hello, I feel like I may have some suggestions for you. I’m a student currently studding the biopsychology, which deals with the way the nervous system communicates with the brain. My fiancé has been dealing with CRPS for the last five years or so. She finds that ketamine (mostly used in large animals) has very promising affects. Although, the drug is not inexpensive, it does provide 2-3 hours of pain relief if taken nasally. It also comes in an oral form. She also has had the more invasive Ketamine infusions, this is where they infuse ketamine directly into the spinal cord and spinal nerves. If you have not yet researched it or been informed about it, I would ask your daughters doctor about whether or not this could benefit her.

Neuropathy is common among those diagnosed with CRPS. Along with fibromyalgia, auto immune diseases, which your daughter is now more susceptible to. Her pain management doctor will likely advise that she keep moving so that muscle break down can be prevented. One of the things that may help is her is finding here a support group. My fiance has a friend who also has CRPS and they talk and support each other. I sincerely hope my advice is helpful.

I also suffer from RSD for 15 yrs. now and horrible thunderclap migraines . The RSD is now affecting my organs. I had my gallbladder taken out in June (2013) and have severe pancreatitis ,GERD ,and now breathing problems. They put me on oxygen about two years ago. I am so tired of the pain, I just want to go home to my LORD and Savior .

With all of this so far they have not mentioned trying to treat her with anything other then physical therapy and the meds they prescribed so far.
When she goes back to neurologist I’m going to b asking about other options. Injections had been discussed but its been hard to get a pain management service for her as most pain management’s don’t treat kids. Even though she is seen at Hershey medical center!

I know your post is from a year ago, but contact me or respond here if you see this. I am 33 now, was diagnosed with JRA when I was 15 months old. I also have CRPS. My treatment experience for the CRPS (granted, with one of the best in the world) has been amazing, and I’m wondering what pharmacological treatment options you’ve already tried. Get back to me if you can.

I know these are all painful diseases but I’m surprised endometriosis did not make the list. It’s one of the most painful diseases, and since it doesn’t really have “external” signs, the patient can go untreated for years and suffer with pain. The pain makes many people become addicted to or dependent on painkillers. How come it was missed?

I’ve lived with Migraines, severe eczema on my hands for 7 years, Crohn’s and Endo, both.. together *and ignored by docs for years* Endo sucks, and when it hurts it really hurts, but with the exception of Migraines everything on this list is chronic pain. If I recall the real pain of Endo lasted a day or 2 per month.. The pain I had with Crohn’s lasted 15 years. Migraines weekly during those 15 years.

BTW Yam based bio-identical progesterone made a world of difference for my Endo — took a few months, but wow. 6% transdermal cream.

Hi Paulette,
I never once said these diseases mentioned here weren’t valid painful diseases. Please reread my post. I have suffered from migraines since the age of 7, with doctors never being able to figure out why. They have been so bad that my head physically swells up! At the tender age of 14, I lost my dad to cancer, after having watched him battle for years with that and hidradinitis supparitiva in his legs. Endometriosis, you would know varies from woman to woman, so you can’t compare the pain you had with that of others. Women pass out from pain with endometriosis. What pain meds did you take, that were of such great help, coz for me there was a point when nothing worked, I mean not even Morphine! So, I know what I’m talking about when I talk of endo. Did you know that endo is a precursor to a host of other ailments that women suffer from? Currently, I’m prediabetic; type 2 diabetes being one of those diseases. I eat very healthy, and avoid sugars of all sorts. Endometriosis causes other diseases like lupus, fibromyalgia and a host of other ailments. So please, before you discredit what I’m writing please read and understand it first, please. And I don’t know what happened to your endo, but if you really did have it, you would know it has no cure, and you would still have it.

Hi Bon,
Please do some research before you type. Endo has no cure. NONE! That’s why there’s a million woman march this month all over the world to raise awareness and help find a cure. It’s statements like these that keep the pain and suffering this illness brings in the shadows because people make insensitive statements without any research whatsoever. Did you read anything I typed before? Please do and please do some research. I have not discredited any of the diseases listed here, and I agree they are painful, but that doesn’t make endo less painful than it is. Please don’t be ignorant, as ignorance isn’t always bliss

Sorry but I have RSD and nothing compares to the pain, no surgery, no cure and it spreads. I worked in the health field and now on disability, how many people are on that due to ENDO? I am not being rude and not saying it doesn’t cause some pain but is curable thru surgery, good friend had it in both tubes to the point she could not conceive, sorry, cannot agree with you!!

Wow, people can be so dismissive of what isn’t there EXACT experience. That’s really sad. My daughter has Endo and a friend does. First of all there are stages of it. Secondly, surgeries do not always solve the problem at all. If you understood it, you would know it can be in other parts of the body and it can be more complicated in some women than others. Just like all of the other disorders mentioned above. Some people respond better to other treatments or therapies or have lower pain thresholds or are allergic to medications, etc., etc.

Mary, I am not saying that my or anyone else’s pain is worse than yours so please forgive me. I know about migraines as I too have debilitating migraines and fibromyalgia as well as IBD so bad that have had to have my entire large intestine/colon/rectum removed – 6 feet which was a major surgery. I had endrometriosis and had a hysterectomy for it including fibroids the size of a 6 month pregnancy. I have neuropathy in both of my feet and a host of other things wrong with me. I am disabled and can no longer work. I have a dear frien with hidradinitis supparitiva and it is hell so I know what you are talking about. It’s just a list. I am on daily doses of narcotic pain medication for abdonimal pain that just makes it tollerable, daily migraine medication to hold the headaches back, which is currently not working, I have to walk with a cane as I loose my balance and fall. There is nothing to relieve m fibromyalgia pain and I ache all over as if I have been badly beaten up. I have chronic fatigue etc. I’m not even mentioning all that is wrong with me. I spend most of my time in bed or on the couch and have no quality of life. So before you hammer me for not understanding please understand that there are people out there suffering from multiple diseases and syndromes too which there is no pain relief. I am sorry your are pre diabetic but fail to see how that causes pain. Autoimmune diseases come in packs. Once you get one it seems as others tend to follow. I have at least 5, I didn’t mention all here as some are not painful. Bless you and I hope you now understand where I was coming from. Sorry for offending you.

I don’t think these groups of patients were studied by which could be cured or not, which had a better quality of life or not, or at all for that matter. The list was..Top 10 MOST Painful Diseases. I think it’s pretty cut and dry. Science has been running tests for quite some time, and has their, what’s it called…McGill Pain Scale? A tell all of who’s in what kind of pain. It is based on actual research from patients. Now, I’m not saying that say, Mary Sama’s pain might not be worse than *most* patients with endometriosis, but most patients do not make this list, unfortunately. Whereas, an overwhelming number of RSD/CRPS patients did. They simply took they highest rating diseases on the pain rating scale, and went by that. I don’t see any reason to get upset. Only ONE of my 4 autoimmune diseases is up here, and I’m not offended by it, I don’t have these other diseases to say otherwise, so I worry about myself!

Like I said before, ignorance isn’t always bliss. I would rather you read and research before you speak. I posted a comment in a country where I have the right of free speech. Why can’t you post comments independently? Why must you derive some kind of sick pleasure coming after me for what I said? Get a life, for God’s sake. Peace and blessings to you!

I had endometriosis and the only thing that helped was a hysterectomy. I have been diagnosed with fibromyalgia forever and have chronic back problems. I am diabetic, the list goes on and on. The pain for each thing is different and it really doesn’t matter who has more pain, what matters is when it effects the way you can live your life. I am familiar with RDS and have treated patients who come to the ER, etc. I thank God I don’t have this disease. The people are absolutely paralyzed with pain when they come in to be treated. I have been in extraordinary pain before, but never like these people. They can’t stay still they hurt so bad. They squirm, cry, shake, come in and out of reality, to all of those with RDS I hope they find a cure. It is, along with others, a horrible horrible disease that makes you believe in assisted suicide.

I’m starting to feel like they are hoping that if they ignore us long enough, then we’ll just shut up and die already…it’s SO FRUSTRATING. It’s like screaming for help while you’re drowning, all the while people are ashore WATCHING US drown, doing NOTHING and hoping that no one asks them to throw out a life line so they don’t have to leave their cozy little beach blankets & picnics.

PLEASE can you just stop about that not being on the list I have three of these diseases but I also have Kyphosis and Kyphosis is more painful then my Crohn’s migraines and arthritis combined..and when I tell a Doctor I have Kyphosis (Schuermanns Disease) They don’t even know what I am even talking about I am only 26 years old and the Kyphosis bent my spine to a 90 degree angle and herniated and fractured disc pinched my sciatic nerve and was crushing my heart, lunges Ect then I got the surgery a 3 foot scar down my spine he broke my back in over 20 places cut and hammered pieces out drilled 22 holes screwed in 22 titanium screws and put in 2 titanium rods down my spine and the disease is still there it’s fractured my very lower back and my neck is bending so I need more fusion. So I get you are i agony but they don’t even know what my disease is…. and they act like a migraine is a headache and my Crohn’s which can also kill me is just a pooping disease and my arthritis is nothing so I feel just like you and im not posting on every post. Want to raise awareness then start a facebook page and get the discussion going for real and I’ll even help you do it! if you have a page tell me and I’ll join it!. How about all of us who suffer work together and not let the DEA take away our medications because WE might GET addicted… please with my pain I could care less if I am addicted to pain killers without them I’d shoot myself.

People are welcome to comment whenever they want, just like you. It’s THAT dismissive attitude that causes many SC Warriors to frequently speak out. SC had been medically documented for well over a century, yet very few advances have been made. It also has a domino effect & causes many secondary conditions, avascular necrosis being one. I’ve had 3 joint replaced (both shoulders & 1 hip) and a total of 8 surgeries for it just to keep me functionally mobile. The hip replacement then brought on scoliosis. We have a right to speak out on the constant neglect and dismissal. It’s very disheartening when you’re in the ER needing help and get treated like you’re “less than” or have the doctor ask “when did you get SC?” That’s BASIC info, like blood typing. As far as awareness groups on FB, many people, whose lives have been affected by SC, created many groups that have been there for a very long time. The “outsiders” just don’t care to listen or participate because “it’s not THEIR problem” especially since they can’t “catch it” or get it ever in life. (Yes, people have ACTUALLY said those words to us…) Feel free to join any or all of those FB groups.

Be the one to do something. You have a computer? Post. Post .Post. I am not African American , but we are all children of GOD and MUST be treated equal. Anything I can do to help just let me know. I will start posting info on sickle cell. GOD bless you and yours.

They did not even come close to describing the level of pain of migraine headaches. They are enough to make you want to jump off the nearest bridge, seriously. They do refer to them as suicide headaches for a very good reason. It is like a fiery hot ice pic stabbing through your eyeball and into your brain for 5 to 7 days on one side of head, then switching over to the other side of your head for another 5 days. You’re nauseated, throwing up, can’t stand flashing, lights, sounds, smells, etcetera. It is excruciating, and many women who have had childbirth and have also migraines, say they would rather have childbirth without painkiller than a migraine with pain killer. That’s how bad it really is. Not accounting for the drug side effects, and days recovering from migraine. It is awful. And an awful way to live. Actually it’s not a life. It’s an existance. 35 years of this, and I get to “look forward” to another 40 years or so of this life.

I agree. I have suffered with them for 37 years. I have had some relief with the Botox injections. But for years I had them constantly, with no letup at all. My quality of life was very low. People who have never had them have no idea how debilitating they are. I love it when they say, “take an aspirin”, like it is that easy. Ha!

I’m surprised gout didn’t make the list. This disease is caused by high levels of uric acid in the body; the uric acid actually forms crystals in joints. These sharp crystals cause inflammation and is particularly agonizing, even the weight of a bed sheet is excrucisating.

I’m also shocked that Lyme Disease isn’t on this list! Late-stage, chronic, neurological Lyme and other tick-borne co-infections like Babesia, Bartonella, Erlichia, Ricksetia, etc., encompass many off the conditions listed. The most painful of which are: intractable migraines, fibromyalgia, muscle cramps, muscle weakness, & uncontrollable spasms like those of M.S., neuropathy, skin rashes and disorders including psoriasis & eczema, as well as crippling joint pain like that of R.A. People who have had cancer and Lyme Disease have said they’d take two more cancers over Lyme, and suicide is the leading cause of death in Lyme patients by FAR. Lyme and Tick-Borne Disease are barely recognized at all, let alone for the degree of which those who have it suffer. I hope that all of these disorders and those mentioned in the comments gain recognition and funding and that all who are suffering may find relief and health in their lifetimes.

That was exactly my first thought. I have been chronically sick since I was 17. I have 2 of the disorders on this list as well as other disabilities. I have a good life.

I have had strangers come up to me in the street and say (word for word) “If I were you I’d kill myself”, simply because I use an electric wheelchair.
This is no better. Don’t presume to judge someone’s life because they are sick or disabled. They may well be far happier than you are.

Exactly! I’m very happy and yet, idiots have told me, I wish I could just sit at home and collect disability. Absolutely disgusting! I make sure to tell them “I wish you could have the pain I have that comes with that disability check”.

I thought I was the rare one that gets idiotic comments from people. I suffer from a few of the illnesses listed, but the Crohn’s pain is BY FAR the worst pain I have ever had in my life. After fighting for seven years (first judge denied me based on lies–one of which was I checked myself out of a hospital I had never even been a patient at in my life!), I finally got disability. I’ve had idiots make that same comment–“I wish I had a disease so I could stay home and get a check”! Heck, I’d gladly give it to them if I could. They can take the pain right along with it. And I also lost a lot of weight–at one time I weighed 300 lbs. and was down to 123 in about 14 months—and when I see someone that I have not seen in a while, they comment on the loss. When I tell them the weight came off due to being sick, they say “I wish I could get sick and lose weight like that’! I have told everyone, even my doctors, that I would gladly take all that weight back if the Crohn’s would go away. They look at me like I lost my damn mind. And as for that ‘sweet check’ I sit at home and collect? It’s not even a third of what I made at my last job before illness took over my life. Some people just don’t even have a clue!

What I really meant was that non-existence provides a respite that often seems an alluring options to cowards like me, who crack up on a slight bout of migraine. I have had my best friend succumb to cancer and oft when I saw her suffer I knew I would have given up any day than to put up a bold fight like hers. I am truly and deeply apologetic, I should have probably found a better way to say it.

I’m looking at these posts, and there is a theme here…competition. “Why isn’t my disease listed as one of the most important” kinds of stuff. Bottom line is that painful diseases and pain remediation are being managed by the DEA, not the medical community… Every patient that is seen in an ER has a NARC score…just like a credit report, and physicians have a primary concern over protecting their licenses taken by bureaucrats who are not clinicians, have budget appropriations driving their actions (not patient welfare) and do take a hippocratic oath.

The “my disease is more important” debate and discussion may have some importance, but it will make little difference to have these discussions in a medical context while we still operate under a bureaucratic paradigm in medicine.

Not copping out……saying that the cart is in front of the horse and that before somethings can be fixed or rectified, attempting to fix something else is an exercise in futility until the principal malfunction is addressed. Hope this helps shed a little light on my meaning.

I’m not trying to play the “my disease is more important than your disease” card, but why is Sickle Cell Disease not listed? In the US, African Americans are predominately affected. But the disease is seen worldwide, affecting people of many different cultures. Unfortunately, we are largely ignored. You never see money being raised for research, and while there are many advocates of the disease, education about how to prevent Sickle Cell is not well known. Most people who know about the illness either have a loved one with the illness, or they are a medical professional who has come across someone with it while working. There is no cure for it, and some of the treatments scare you more than having the disease itself. Not making this list makes us feel how we often feel while seeking medical treatment: like no one understands, and no one cares

I’m just curious as to why sickle cell anemia isn’t on this list?… I won’t go into this long drawn out reason but All of those diseases are pans that are developed. SC, We are born with this pain and and in my opinion and many others, Sickle Cell should have been on this list, the pain we feel everyday is pain that is unexplained, just take the time and ask one of us. It’s a disease that we can’t get rid of, a pain that we can have in any part of our body where blood flows, and we can feel pain all day everyday or as we walk down the street it can just come, that’s a pain you will never imagine, a pain that makes you ask God to take your life because it hurts so bad and we have this type of pain all of our lives.. I just think you should have done more research about the diseases that are out here.. ~TootieLeathia~

You really should add endometriosis to this list. I, and many other women, suffer from this debilitating disease that is sadly still misdiagnosed and ignored. Education needs to be given, as many doctors are still ignorant to this problem, and frequently tell women suffering from it that it’s “in their heads” or “tough up, all women get cramps.” From personal experience I can tell you that “cramps” don’t cause women to pass out, throw up or go to the hospital. But endo does. Please update this list and add endometriosis to it to help bring more awareness to this painful disease.

While I understand there are some diseases that did not make the list… and I know how painful some diseases can be, ABSOLUTELY NOTHING HELPS CRPS!! It never goes away!(Your lucky if you go into remission, and the chances of that are very slim) no medication, therapy, etc. Helps! If you look at the McGill pain scale, CRPS is the highest on the list, topping having a finger amputated without anesthetic, child birth, and others! And the funny thing is, NO-ONE REALLY KNOWS ABOUT IT!! THERE IS NO AWARENESS FOR THOSE OF US THAT SUFFER TREMENDOUSLY!! I’m not saying my disease is worse then yours, but at least your disease has awareness! The description of CRPS given above, does not even come close to correctly explaining this disease. Trust me and all my fellow CRPS’ers, IT’S WAY WORSE!!!

LDN is not an option for me. It is touted as a way for pain relief for fibromyalgia too but you have to go off of all pain medications for 6 months. I can’t do that as I have migraines and severe abdominal pain related to IBD surgeries. Plus I’ve been in support groups and from what I’ve read in them all people using LDN are not getting relief. I’ve discussed this with my doctors as well. I am happy for those that it helps but please discuss this with your doctors before trying.

You do not have to be off all pain meds for 6 months…not even close. You just have to be done with the “withdrawal window” since LDN can induce/exacerbate withdrawal symptoms. A month? 6 weeks at the VERY far end? I know people who went on it as soon as the acute withdrawal was over. I’m on LDN through one of the leading CRPS doctors in the country (Aradillas at Drexel Univ…2 year wait list for this guy), and he is NOT making anyone wait 6 months. I am getting immense help from it, for both my CRPS and Rheumatoid Arthritis. Its really balanced my immune system out.

You are so right . Nothing helps, but I live in Colorado and just started on medical marijuana edibles and topical . Now I am not going to lie and say it takes all the pain away, but it does lessen it for a while. Stay strong my sister pain warrior .

I need to visit some friends in Colorado as I’ve heard the low THC cannabis does help the pain with several of my pain problems and how I would love to quit taking narcotics that affect my already problematic memory and fibro brain fog.

I am new to this Website. I just discovered the Rocky Mountain CRPS/RSD organization. When I read the comments, I felt like people were telling my story. I was diagnosed 10 years ago and not one doctor has known what to do with me so I have been on and off a variety of meds and in and out of treatments, none terribly therapeutic. Several years ago, I was diagnosed as an adult sleep walker and since they couldn’t find the cause of it, they don’t know how to treat it. I am encouraged to read that there are new treatments for all these horrible diseases. I had no idea how many people are suffering with chronic pain. “A diseased existence is worse than non existence” ….absolutely!! and the disease can’t win.

Welp. This is why I use cannabis. I’m not kidding or being a stupid “stoner”. I have 3 of these. Chrons, fibro, and migraines so bad I can’t move because if I do the searing pain will shoot through my head and make me vomit.
I wouldn’t have been able to make the 40 minute walk today (both ways, so 80 total) to Home Depot to get supplies for my spring homestead project. (Hey, it IS an accomplishment when you’re as sick as I am. Lol)
For any and all in the comments suffering from chronic pain or even acute pain, you have my complete empathy. We all have a lot of ways in which we can support each other to make this kinda crap easier, though. Compassion and patience to a long way.

#1) I’m very surprised that CRPS/RSD (which is #1 on the list), was even known by the author! It’s rare for people to know what it is.
I’ve had it for 2 yrs, and Fibro for 7 yrs.. The two don’t compare *in my case*. I was able to work full time & go to school with Fibro. I’m lucky if I get out of bed, after breaking my right foot in March 2012 & developing CRPS/RSD. I have it in my right foot..that’s spread up my leg,as well as my left foot/leg. I’ve also started to get flares in my arms, which is scary. I’m 26 yrs old and can’t work, have no social life, my friends disappeared.. I’m not able to contribute to society. Instead, I’m back to being 100% dependent on my parents.
The definition isn’t really even correct. And the description is put lightly.
Imagine getting skinned alive, while someone lights you on fire, then takes a Brillo pad and scratches you, then drops pins & needles. And to throw a curve ball, suddenly all the above happens except you are being dunked in an ice bucket! Instead of being lit on fire!
I wouldn’t wish this on my worst enemy.
There’s no cure. It’s hard to see a light at the end of the tunnel.
That’s probably why it’s known as the “suicide disease” ugh. It needs as much awareness as it can get. We need a cure. Hopeforyourcause.org is a blog that ive made to share what it’s like, living as a CRPS fighter. I hope EVERYONE has a low pain week<3

migraine are the worst! I hate them and cant take those migraine meds without having out of body experience. Just had a migraine that lasted a week and my vision is still not right. For people who dont have them understanding them is hard. I was told its a brain event and is treats your boy the same way the flu does except I think the flu is kinder! migraine sufferers you has my sympathy! i sure hope with all the advances made in medicine they would be able to find an effective treatment for them

You Forgot “The suicide disease” also known as Trigeminal neuralgia. Trigeminal neuralgia is considered by medical experts to be one of the most painful conditions known to humankind.It consist of pain in the face that never ends. Electric like shocks, burning, prickling, spiking and gnawing are some of the 24/7 symptoms. The worst part is, there is no known pain killer that can stop the pain.